M’Histoire: Passing the Cup

I don’t know if other folk are like this or not, but for me, the more I think someone is trying to hide something from me or cover it up, the more determined I am to find out about it. That’s why I started learning French — my mother’s family is Cajun and my parents used flashcard French to keep secrets from the kids when I was young. So of course, I had to take French the very first opportunity I had. It is almost automatic, I don’t even think about whether or not I actually want to know, I have to know!

When people talk to me about something and won’t meet my eyes, well, they are hiding something, right? When my clinical friends won’t meet my eyes, well, what could be the reason? Does this mean I ought to be more worried than I am? Because I’m not as worried as I could be. When the docs thought I might have ovarian cancer, well, I was really worried then. But a very slow growing bone tumor in my mouth? Not so much.

For one, I know this bony growth intimately. It isn’t hidden away in my belly where no one knows what’s going on, it is right where I can see it and touch it, and do touch it countless times every day. I’ve observed its growth from when it was just a tiny thing to this kidney bean sized lump that lightly scrapes against my tongue when I swallow hard.

For another, I’ve been working with patients with facial difference and count several among my friends. I know that the surgery is tough and miserable and that it isn’t fun living with the subsequent lifestyle changes, BUT I also know that you can do it, get over it, and go on with a relatively normal life. I won’t ever say I would want this to be cancer, would ever choose this, but if it is, I figure it could be a lot worse.

Actually, sometimes when folks meet your eyes they are also getting ready to hide things, and then with healthcare it gets complicated by the culture of clinical care in which it is some odd balance between “informed consent” (often neither “informed” nor “consent”) and protecting the patient from what they don’t want to know (but without any good way to find out how much they want to know. Telling patients the truth can be a kind of attack also, intimidation, kind of ‘see how much I know and why you really don’t want to ask?’ Or it can be compassionate and genuine communication.

When I was in the first meeting at oral surgery, I remember when the penny finally dropped for the student interviewing me. He froze, staring at me, right at me, as if he’d never seen me before. You see this whole situation goes back a while. I started to say it started in October, but really, the bump has been growing for years, at least 10 or 15, and I first remember noticing the oral fistula when I was in 4th grade. But the bump, I’ve been trying to tell folks about for at least a decade, maybe two, and the docs kept saying, “Don’t worry, this is a normal anatomical variation called a torus.” to which I kept saying, “But it ISN’T normal!!!” thinking, ‘If it’s normal why does it hurt? And it’s NOT a torus!’

When the student figured this out, he asked me, “Do you mean when you were born the roof of your mouth was smooth?!”

I laughed, “That’s what I’ve been trying to tell people for years!”

“When did you first notice it?”

“Oh, I don’t know. Maybe my late 20s, maybe my mid 30s?”

It never entered my mind that the docs thought I was born this way. Or that they never noticed the blasted thing was growing. I kept trying to get their attention, and just never said quite the right things. I didn’t know what were the right things to say.

So when the student had me wait in the room while he went to talk to the attending surgeon, my ears were cocked and I was already assuming that there was something going on that concerned him. I overheard just a couple little snippets — “midline,” “bony growth,” “late-20s,” and “but she’s the DENTISTRY librarian!” I wasn’t sure quite how those pieces fit together, but I was curious.

When the surgeon came in the room, he was followed by a small flock of students, with the usual embarrassing dynamic of “Wow, the surgeon is GOD” and “God, I feel so funny when the patient looks at me.” The senior student who’d interviewed me was clearly relieved to pass my case over to an expert, and reported out clearly. I committed the words to memory, and when I got home, started poking around the internet trying to figure out it was that had gotten his attention. It really didn’t take me long to find something that fit pretty closely.

Slow midline bony growths seem to usually be osteochondromas (benign). They sometimes convert to chondrosarcomas (cancerous, malignant), which is usually indicated by pain, and usually the pain is pretty definite, not the mild stuff I’d been experiencing. These usually happen in the long bones of the arms and legs, but rarely happen in the head, and very rarely in the palate.

If it is cancer (which is unlikely), the surgery is not pleasant, lifestyle changes ditto, but the good news is no chemo or radiation. If it is not cancer, the whole thing is not a biggie – they slice the bony bump off and send it for screening at pathology, and close the fistula. I do what they recommend to recover from the surgery and go back to my normal life. Either way, this could be a lot worse.